Heather Lister: When I was born, I was diagnosed with a heart murmur and was checked every year. The only limitations I had were, I was told, I had to take antibiotics any time I went to the dentist. And it wasn't until I was in my 20s that I decided to take charge of my health care. And I found a cardiologist. And he did a very thorough examination, or so I thought at the time. And he told me that I actually had a bicuspid aortic valve. I was going once a year. And my valve looked OK. So I was put off to two years.
More recently, I couldn't catch my breath as easily as I used to. I felt tired. I just didn't feel right. So I sought the opinion of the cardiologist, who told me that my valve was fine. And he would see me in two years. I just wanted to be sure. So I decided to go to Mayo and get a second opinion.
Carolyn Landolfo, M.D., Cardiovascular Diseases, Mayo Clinic: Heather had been told on the outside that she had nothing to worry about. But some patients who have a bicuspid aortic valve also have an abnormality of their aorta.
Heather Lister: No one had ever mentioned a connection between my valve and the possibility of an aortic aneurysm.
Dr. Landolfo: An aortic aneurysm is a condition where the aorta becomes enlarged. The layers of the aorta become weakened. And they're prone to either tearing or even rupturing. And that can be obviously catastrophic.
Heather Lister: I felt like I had a ticking time bomb in my chest.
Dr. Landolfo: We came up with a plan to individualize her care.
Naser M. Ammash, M.D., Cardiovascular Diseases, Mayo Clinic: If you take patients who we follow with a aneurysm in the setting of bicuspid valve, around 30% will have surgery for the aorta. Although, the risk an aortic operation is really, really low, you never know when someone is going to have a complication related to surgery.
Healther Lister: The issue with this is there are so many unknowns. And it's always a risk/reward in whether the risk of the surgery is greater than the risk of dissection.
Dr. Landolfo: In the meanwhile, Heather had gone to the emergency room, at least twice with chest pain. So we made the decision to go ahead and get her aorta repaired. Fortunately, because her valve was in such good condition, they were able to resuspend her valve without having to replace it or have any damage.
Dr. Ammash: We know how to take care of patients like her. It's from the sonographers, who did the echocardiogram and identified the dilated aorta. It was Dr. Landolfo, who visited with her initially and explained to her what the real situation is. The additional imaging of the chest, the CT scan, to look at the whole aorta, so the radiologist saw her. Then because she has a congenital heart defect, I came into the picture, because of the congenital background and expertise needed in decision-making. And then you have the medical genetics involved as well, because of the genetic basis of her abnormality. And then the surgeon, so this collaborative effort between different specialties with a focus on Heather is unique. I think we do it better than anybody else.
Heather Lister: I had surgery, and I graduated from cardiac rehab. And now I just finally feel like I'm back to who I was a couple of years ago.
I think this whole experience has given me a passion about advocating for yourself. When you know something is not right, you need to fight to be heard. When I came to Mayo, I felt like I was listened to and understood. And if someone didn't have an answer, they were going to get an answer. I think it made all the difference in the outcome.